The Rights of the Intersex Child

One out of 2000 infants is born with intersex
genitalia. Intersex children are those who were formerly known as "hermaphrodites."
They have some degree of mixed genitalia.

NOCIRC believes that, in accordance with the Declaration
of the First International Symposium on Circumcision1
and the Valencia Declaration of Sexual Rights,2
intersex children have a right to protection of the integrity of their
body, even though it may not conform to a male or female norm. Such
children similarly have a right to protection from unnecessary investigation
and treatment by the Charter for Children in Hospital.3

The needs and interests of the child must be the focus
of any treatment plan.4 Children should
have an opportunity to consent to their treatment.4
The Committee on Bioethics of the American Academy of Pediatrics (AAP),
in its 1995 policy statement, Informed Consent, Parental Permission,
and Assent in Pediatric Practice,5
clearly indicates that non-essential surgery should be deferred until
the child is of an age at which s/he may consent for her/himself.

Parental discretion is not absolute, and professionals
must maintain an independent obligation to protect the child's interests.4
Moreover, The Committee on Bioethics states that parent rights are limited
to the granting of permission for diagnosis and treatment.5
The physician responsibilities are to the child patient and patient
care should be based on the child's needs and not the needs of someone
else.4,5

Immediate surgery to alter intersex genitalia should be
reserved for those rare life-threatening conditions that demand immediate
intervention. Kipnis and Diamond considered the ethical problems inherent
in genital altering surgery on intersex legally incompetent non-consenting
minors; they call for a moratorium on non-therapeutic surgery to alter
the genitals of non-consenting intersex children.7
The British Medical Association has joined others in calling for the
reform of the intersex care and the deferral of non-essential genital
alteration surgery.8

Parental consent to non-therapeutic alteration of children's
genitals may be unlawful. The New Jersey Supreme Court holds that parents
do not have the power to consent to irreversible alteration of an incompetent
child's genitals to effect non-therapeutic sterilization.9
Similar reasoning also may apply to non-therapeutic irreversible alteration
of an incompetent intersex child's genitals.

If that should be the case, then parental consent to non-therapeutic
genital alteration surgery would be vitiated. If consent is vitiated,
then any surgical procedure would be an act of battery,10
thus making the surgeon liable to the child for any injury caused by
genital alteration surgery.

In spite of these legal and ethical considerations, the
Committee on Genetics of the American Academy of Pediatrics recently
issued a policy statement, Evaluation of the Newborn with Developmental
Anomalies of the External Genitalia.11
This statement characterizes the birth of an intersex child as a "social
emergency" that calls for immediate treatment and surgery to calm the
fears and emotions of the parents. This policy violates
the AAP's own guidelines in pediatric bioethics, fails to recognize
the fundamental legal and human right of the intersex child to bodily
integrity, and so is deeply flawed.

The Committee on Genetics has abandoned bioethics, law,
and the right of the child to protection of bodily integrity, protection
from unnecessary surgery, and the right to informed consent; while supporting
relief of the parents' so-called "social emergency" through non-therapeutic
genital altering surgery on the non-consenting legally incompetent minor
child. The AAP policy statement, Evaluation of the Newborn with
Developmental Anomalies of the External Genitalia,11
ethically and legally, is unacceptable.

NOCIRC rejects the views of the Committee on Genetics
as expressed in that statement. Intersexuality is not a life-threatening
illness, except perhaps in rare cases, so immediate surgery usually
is not required. It is the intersex child, and not the parents, who
is the patient. It is the intersex child, and not the parents, who must
dwell within her/his body. It is the intersex child, and not the parents,
who legally must decide about body-altering irreversible surgery when
s/he is of age.